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Monday, March 30, 2009

We're still here. Things are going extremely well. Lisa is doing so well, that our biggest is remembering that she is still highly susceptible to everything so that even though she begs to go places, it is in her best interest to make sure she is not in an environment where she is exposed to numerous people or germs.

Her eating has picked up a bit....she doesn't eat much in one sitting, but she seems to be grazing quite a bit. Unfortunately, her picks are still chips, suckers and noodles...not quite a balanced diet, but we are getting there.

This week will be a busy week....she has a vaccine scheduled for tomorrow along with blood work and consultation with radiation. The rest of the week will be trips to Motts for MIBG scan to pinpoint our progress.

All the rest of us are hanging in and doing pretty well and oping the warm weather comes to stay.

Monday, March 23, 2009

So far so good. Lisa has been doing very well. It has been a nice change of pace these past two weeks. We've almost gotten back to a "normal" schedule or perhaps we've just adjusted to the new norm. It's nice having everyone sleeping under one roof again. Lisa chooses to sleep in the spare bedroom all alone claiming her own bed is not "cozy". Not sure what Grandma Mac is going to do when she comes for a visit....looks like she has a roommate.

Health wise, Lisa looks great and is back to running around and making us laugh. She looks so good, I have to keep reminding myself that she is "sick" and can't be exposed to crowds or germs....it's seems nearly impossible that the smallest germ could put her back in the hospital. I pray every night that her health keeps holding and we make it thru the 100 days without a stay at Motts. Her eating has improved slightly and she still gets the IV nutrition at night. It's tempting to just take her off IV all together to see if her appetite would come back, but we have to be careful, she needs her strength and nutrients to stay healthy. We don't want to risk anything and stop the IV if we don't know for sure she will eat enough to keep up her strength.

Last week she got her first vaccine. It was a long day at the hospital that included a CT scan, blood labs, office visit and her own custom made vaccination. She did really well. The vaccine was the hardest thing because of the "poke". I didn't want Lisa to get all worked up so I waited until right before they gave the shot to tell her. Unfortunately, this meant I had to wake her up from the nap she was taking on the exam table...like I said, it'd been a long day and her body went into snooze mode while we waited for the nurse....being woke up from a nap is enough to make her grumpy, add in the news she is going to get a shot...well, there tends to be some crying and screaming. But, we got to do what we got to do. Being the trooper that she is, she played the "who can say ow louder" game with me while she got her shot. I definitely yelled the loudest, but they let her pick a prize out of the box. After that, we called it a day.

Next week Tuesday will be a busy day. Lisa goes back for her second vaccine shot and we meet with the radiologist to learn about the type and duration of radiation they have planned for her. Sandwiched in-between those two appts. is a follow-up with Maranda's surgeon to see how her latest MRI looked. We still have no real resolution on her back condition. Once surgery was done the recommendation was that she wear a brace even though there is no scientific data to support that wearing the brace will remedy the condition. Basically, it's to make us feel like we are doing something, with the reality being that once she is done growing she will most likely have a spinal fusion done. We will definitely keep discussing and exploring options, but at this point, we will not have her wear the brace but will keep a close eye on the curve with x-rays and MRIs. She'll also be working with a chiropractor.

On a GREAT note, Maranda was named student of the month by her teachers. This is an award earned by select students who display good character traits! It was very heart-warming to hear Maranda's teacher read why she nominated her. While we all know Maranda is awesome, it was nice to have the school recognize it as well and it was a reminder of how blessed we are to have 4 wonderful children in our home. To read Maranda's nomination, click here.

Tuesday, March 17, 2009

Saturday, March 14, 2009

We've managed to escape to the lake house and treat ourselves to a "vacation". It's nice and sunny and bright here today. The lake is up to the house and with the temps warming up you can hear the lake "cracking". It's actually much different than I expected. The kids say it sounds like whales talking (hmm...didn't realize they've heard whales before). I can't really describe it...it's pretty cool...you'll hear the noise in the middle of the lake and then it's comes across the lake almost as if it was traveling along the cracks in the ice. I'm sure there is a scientific explanation for it...but I can't even grasp it right now.....I'm just happy with "it sounds cool".

I realize that we never explained the 100 day "rule" to all of you. The day of the BMT transplant is considered day 0. For the 100 days after transplant, Lisa will continue to be immune suppressed. The "100 day mark" is generally considered a milestone - by this time, docs will assume she is past the worst of the procedure and on the path to recovery. Again, we've been pretty lucky. Lisa sailed thru the transplant pretty easily; there are many things that could have gone wrong and there is still room for problems. It can take up to two years to fully recover from a BMT and return to full health (that's just the BMT recovering, that doesn't count any side effects, residual cancer, returning cancer, or any other unexpected surprises). She will be watched very closely. Interestingly her 100 day mark will be 6/6...just 5 days shy of her diagnosis date of 6/11. To read more about the in's and out's of BMT you can check out the PED-ONC Resource Center.

So what does that all mean? For now, it means when we say she is home....we mean home. She has almost no immunity and can't be exposed to anything and can not be in crowds (makes taking her to the hospital interesting....she has to wear a mask and we don't let her touch anything, and we run from any one who looks sick). That means no store, no church, no school, no big family parties (like your brother and sister's communion), no movies, no bowling, no zoo.....okay, so you get my drift. It's actually taken me these last 3 days to fully grasp how difficult this will actually be for me. I'm so used to being able to run an errand whenever needed that there's already been a few times I had to rethink things. Can't run to the store to get milk, can't take her into work to say hi, can't take her to my doc appt....not a huge deal, just an adjustment. This will be a good time to get our house projects caught up!

Keep praying! We still have a long road ahead. Healthy visitors are welcome...Lisa needs some different people to play with.

Friday, March 13, 2009

Lisa is settling into home life once again quickly. She's started eating and drinking right away and is just about always interested in food and drinking. Here she is pictured with Kinley, our sitter/tutor's 3 week old baby. For those of you that don't know, whenever we ask Lisa what she wants to be when she grows up the answer we always get is "a mom". As you can see she was delighted to get to hold Kinley. Lisa commented on how wiggly she was, unlike her baby dolls. (Of which she probably has 40).

So she's off to the clinic today for blood work to make sure that she is ready to start the vaccine study on Monday. Thanks for checking in everyone!

Wednesday, March 11, 2009

We can hardly believe it. Of course there's still more to come but what a relief! Labs to draw on Friday and the vaccine study starts on Monday, but everything is outpatient. Here's a few photos of just a few of the hero's at Mott. There are so many more. We'll try to post more as we get more pics. In the pictures are Child Life Specialist- Donovan, Med. Student - Stephanie, RN - Stephanie and Med Tech. - Jana. We can't thank you enough for all you've done for our little princess.

Monday, March 9, 2009

Mike and I were able to enjoy a some time away in Lansing on Saturday night leaving Lisa in the capable hands of Maranda and Mike's sister Sharon. They all made it thru the night and kept up the endless routine of diaper changes and temp watch with Sharon assuring us that "It's nothing we can't handle". A great big thanks to Sharon and Walt (who watched Chrissy and Thomas) so we could get away.

I relieved Sharon late Sunday afternoon and was happy to hear that Lisa had been fever free for most of the day. With a bit of force, we convinced Lisa to walk to the elevator to bid Aunt Sharon and the others goodbye. She spent a good part of Sunday sleeping. At about 6:00 in the evening...Lisa was BACK. The fever was gone, her spirits were up and she was giggling and playing away. She kept doing this right thru the night until 4 a.m. "I'm not tired" she kept saying. I drifted in and out of sleep thru the night and heard various bits of conversation with Lisa and the night nurses....all of which ended with "you should be sleeping".

She finally went to sleep around 4 am and slept until 11 am. Once she shook off her sleep we played on the computer, talked with some visitors, went for a walk and did a craft. She ran out of steam around 4 pm and I let her take a 2 hour nap. We followed this with a craft and bath and an attempt to scare Mike and the other kids when they came off the elevators at 7pm.

Lisa has definitely turned the corner. Her fever is gone, her counts are up, she's feeling much better. I'm ecstatic. She looks great and it is such a relief. If all holds well, she's coming home Wednesday. It is amazing! I'm ecstatic...did I say that already?! I just can't believe it. Once she's home, if she doesn't spike any temps or have anything out of the ordinary happen, we're done with overnight stays at Motts. Can you believe it?! AWESOME!!! The rest of her treatment (radiation, vaccines, follow-up tests) is scheduled to be out patient. Yeah!!!

I am thankful to all of you who read and pray. I continue to pray and hope that you will to. There is a very small percentage of children who beat this cancer...and right now....I'm feeling pretty positive and BELIEVE she's going to be one of those children. I cannot imagine her not surviving. She needs to go on and be that beacon of hope for all of us who face adversity in life. I have every intention of making sure she starts kindergarten in fall....even if I have to push her in on a hospital bed with tubes intact. I have no intention of spending countless nights on Motts Floor 7 ever again. I believe that you attract things to you and I'm going to really focus on attracting sand, sun, beaches, princesses, fun.....and leave chemo, nausea, hospitals far behind.

Always praying...always hoping....believing God knows what is best and will provide me the strength to persevere.

Friday, March 6, 2009

Apparently people are tired of reading about poop...I'm right there with you....I'm pretty tired of writing, reading, smelling, seeing poop! Gotta believe Lisa is tired of it too.

So....if we can't talk about poop...what can we talk about? Hmmmmm....well, blood counts. Her white blood cell count rose a bit again today which is a good sign...it means her body is starting to recover. Her platelets were good, but her hemoglobin was low so she got red blood cells today.

Temperature...She's been spiking some pretty mean fevers (we're happy when she holds at 100) and her blood pressure is dropping a bit low. She is also asking for more liquids, which is good, but also causes more of the subject matter we aren't talking about. Fevers, low blood pressure and continual drinking could be from dehydration or could be her bone marrow grafting. Docs are keeping a close eye on her and watching the fevers and testing for infections, but don't seem overly concerned.

We had a pretty good night last night. Lisa still woke every hour from 1-6, but when she was sleeping it seemed more peaceful.....could be the pain killer we finally switched her to. Talk about your "duh" moments. I don't know why I kept having them give her anti-nauseameds...her past experiences have shown that what we assume is nausea is really pain. She seems to tolerate the pain well, so we often misread it as nausea and force her to endure what I can only imagine is some pretty painful moments. Once we start to administer pain meds she seems to be much more comfortable.

So while last night seemed more restful than the others this week. This afternoon has been a bit difficult...her temps are up and she seems to be in pain which makes her whiny, inconsolable and a little erratic. She'll go from demanding to go for a walk to telling me to get away from her to flopping on the bed to telling the docs she hates them to closing her eyes and flicking everyone away to murmuring I love you....all in a matter of minutes. Much as I love her and try to be sympathetic, she's pretty bitchy right now. We all know who the queen bitch is, so rather than pull rank on our little princess, I've chosen to take the high road...the one that leads away from her room! We've got some good hospital staff and volunteers stopping in today and I've taken every opportunity to get out of the room that I can.

So....unmentionable subjects, fevers, blood counts, sleepless nights are all par for the course. Docs still thing she is doing good and even is a little ahead of schedule. They anticipate another 48 hours of this stuff and than on to better days. The one doc even hinted, if we don't experience any setbacks, we could be out of out of here by next Tuesday or Wednesday. THAT WOULD BE AWESOME!!!!!!!!!!!!!!!!!!!! YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!KEEP THE PRAYERS COMING

P.S. To all the Nic Jonas fans and wife want-to-bes....you are all too young to be married...you need to go to college, get a job, get your own place to live and then find a husband.....if you wish to continue writing about Nic, you'll need to start your own blog because I will be censoring any conversations re: him;)

Thursday, March 5, 2009

Thursday 8:15 AM. Lisa slept reasonably well last night. We were awakened for something or another at least every other hour during the night but we managed to do alright. Lisa has surprised me this morning asking for and drinking juice (cran-grape) and water and just a few moments ago Milk. I'd estimate about 4-6 oz. in the past hour. This from a little girl that hasn't asked for any liquids or food in over a week. I'm hopeful that it's a signal that we're close to turning the corner or rebounding. [please, please, please, let it be so...]

I'll try to update throughout the day today.

9:30 AM - No sooner do I post that when we have an whirlwind hour of changing diapers (the third was a blow out) three baths (because the stuff just wouldn't shut off) and a couple bed changes. The hazmat team is in here now decontaminating the area. Lisa is sleeping again, my coffee is now cold and I'm pooped.

Tuesday, March 3, 2009

Lisa fell asleep yesterday evening at about - oh - 8:30 PM. Except for a few diaper changes and whatnot she slept through the night. Matter of fact she's still sleeping and it's 9:00 AM. Lucky for me I can go to sleep without much effort. (See I just took a nap and you didn't even notice.) Where was I? Oh, so she's sleeping but as Linda pointed out yesterday, she is "crashing". By that I mean her blood counts are bottoming out. Her mouth sores are getting pretty uncomfortable and there's blood in the stuff that gets spit up. She's also spiking fevers but we're assured that this is pretty much status quo. She is on antibiotics, pain medication, and Tylenol and has had platelets twice. Basically we are trying to keep her as comfortable as possible while her body does all the heavy lifting. She is strong. She'll occasionally cry out but then she'll close her eyes, take a few deep breaths and say nothing is wrong. It's almost like she's bearing down on it internally. She is amazing...

11:00 AM - 5 or 6 diapers and one bucket dance later. It's been a busy morning. Good thing she had plenty of rest. She's not interested in TV but she's happy with her new doll that she got for taking all her meds. She mentioned at one point that her side hurt this morning. When I looked at the spot there was a ring about an inch and a half across. Ringworm? Not sure yet. The doctors will look at it shortly.

1:00 PM - A couple more diapers and one more bucket dance. We gave her some Adavan which settled her stomach and made her sleepy. The doctors theorized that the ring on her side is where she was laying on one of her dolls baby bottles. So with the first chemo drug "Thiotepa" still coming out through her sweat and the bottom of the bottle up against her skin, this caused more sweat there than in other places and subsequently that's what created the ring pattern. Mystery solved.

Monday, March 2, 2009

According to doctors things are going well, as planned, and Lisa is responding how they expected. It is good news and considering all things she looks really good.

Unfortunately, I'm exhausted. I just haven't been able to get back on my game since a few weeks ago when I was sick. Nights like last night make it even more difficult. The nurses check in on Lisa every hour...this is helpful and usually gives me a chance to sleep. However, last night Lisa had very bad timing and seemed to require a diaper change 10 minutes after the nurse left the room. That meant that I had to get up and change her, which at times was quite messy and meant extra cleanup. By the time we would get settled in, the hour was up, the nurse would check in again, leave, I would start to go back to sleep and Lisa would let me know she needed her diapered changed...again. The cycle repeated. Every so often Lisa added the bucket dance to the routine to liven things up. It is just heart wrenching to see because there is basically nothing but mucus for her to throw up (gross to write, even grosser to catch!) But, once again, Lisa was a trooper...she'd exhaust her little body and snuggle back down into bed until the next round. Every so often she'd call out in her sleep. Other times she'd wake up in pain...when I asked her what was bothering her, she'd say she didn't know. I'm guessing mouth sores. So, we struggled thru the night and ended up catching some 4 straight hours of sleep from 6 am to 10 am.

Salvation came in the way of a good friend...Lisa G. came by to keep Princess Lisa company and give me a break to get out of the room, grab a bite to eat and get some work done. So kudos to Lisa G. for putting up with my whining and hugging princess Lisa tight when they kicked me out of the room!

Docs keep saying we are still on the spiral down...things will get worse before they get better. Patience has never been my virtue and I'm anxious to get through phase and bring Lisa home. Taking it day by day and trying to stay focused!!

Click links below to:

Hospital Info

O Holy St. Anthony, gentlest of Saints, your love for God and Charity for His creatures made you worthy, when on earth, to possess miraculous powers. Miracles waited on your word, which you were ever ready to speak for those in trouble or anxiety. Encouraged by this thought, I implore of you to obtain for Lisa health, strength and to be cancer free. The answer to my prayer may require a miracle. Even so, you are the saint of Miracles. O gentle and loving St. Anthony, whose heart was ever full of human sympathy, whisper my petition into the ears of the Sweet Infant Jesus, who loved to be folded in your arms, and the gratitude of my heart will ever be yours. ___________________________

St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter, Lisa and ask him to restore our child to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen.___________________________

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them. Matthew 18:19-20